A Letter to my Family & Friends About my Chronic Pain

I have to thank Lifeinslowmotion for this writing promt, which was only meant to be personal journalling, but that I just needed to share here. Hopefully, it will help others with Chronic Pain to communicate their struggles to family members & friends.

To my dear loved ones;

You may have heard snippets about some of the medical issues I have, or you may have heard me complaining about various ailments that don’t seem typical of a gal my age. I try not to bombard everyone I know with complaints, and prefer to try to live as normal a life on the outside, but behind my smile, there is often pain, anxiety, and stress.

I have Fibromyalgia, Osteoporosis that has caused some serious micro-fractures in my c-spine, and Arthritis. I also suffer from frequent migraines, but since I don’t usually get an aura before a migraine, there is little I can take that will actually help. Like most of my conditions, I use natural therapies to help alleviate the pain. You can read about my migraine remedies here. I am now being tested for Hashimoto’s disease as well, as it appears to be genetically linked to a few family members.

Fibromyalgia is poorly understood, but if you want to learn about it, please read the article here that describes everything you need to know about the condition and its co-morbidities (which alone can be crippling). The standard testing for Fibromyalgia is a ‘pressure point’ test, where a Rheumatologist presses on various ‘trigger points’ on your body. If you score over 11, you’re diagnosed with Fibromyalgia. I scored 14. Oftentimes, co-morbid disorders are also taken into account in diagnosing Fibromyalgia. This can include Irritable Bowel Syndrome (a VERY painful syndrome that leaves sufferers with either constipation, diarrhea, or both) and also causes agonizing painful contractions in the stomach. It’s really hard to live your life when you have diarrhea for months on end, twenty times a day sometimes, and have to excuse yourself from your responsibilities to run to the bathroom frequently. It especially makes it difficult to travel, as being in a car on a highway with no bathrooms for kilometers puts me in a very awkward position. Fibromyalgia flare-ups can be caused by illness, changes in the weather, and stress among other things, but unfortunately there’s no magic remedy or cure for it. Flare-ups can cause my skin to become sensitive and hurt the way it does when you have a high fever, or like a bad sunburn. It also causes muscle and joint pain, causes ‘brain fog’ (makes it hard to think straight) and I’m easily exhausted during flare-ups.

Osteoporosis is a thinning of the bones, which makes them weak and prone to breaking. I have what one doctor described as ‘the bones of a bird;’ they’re mostly hollow, and I have microfractures everywhere. It’s painful, and it’s really important that I keep my muscles working to help support areas where the bones are weak or fractured as carefully as possible. It also means that it’s very difficult for me to find a position that allows me to recline my head so that those muscles aren’t overworking to support the weakened bones.
Most people know what arthritis is, and luckily mine isn’t severe. My hands do kind of ‘freeze up’ in the mornings, and it’s hard for me to the simplest things such as opening a bag of veggies, carrying grocery bags, peeling an orange, etc. It’s in my knees, too, but I have bigger problems with my knees because there is no cartilage left to buffer between my femur and kneecap. My knees frequently ‘give out,’ and that hurts like hell. They also crunch dramatically when going up stairs, something my kids think is hilarious!
Like anyone else with a chronic illness, I find ways to function, but my illnesses are ‘invisible.’ That doesn’t make them any less real than, say, being confined to a wheelchair. You need to understand that these conditions are very real, and have a huge impact on my everyday life.

I appreciate the support that I do receive from friends and family, but I also want those who don’t yet ‘get it’ to understand where I’m coming from, and why it can sometimes be hard to make it over for that cup of coffee, or why I can’t always help others out when they need me. It doesn’t mean I care less about you – it just means that I’m recognizing my limits, and trying to have as many good days as possible without wearing myself out.